Engaging Patients in Learning Health Systems Research Using Human Centered Design: A Scoping Review

The "Learning Health System" (LHS) relies on meaningful patient and public engagement to foster innovation in healthcare. However, effective methods for involving these stakeholders in LHS research are unclear. This scoping review examines the use of Human-Centered Design (HCD) to engage patients and the public in LHS research.

Following Joanna Briggs Institute methodology and PRISMA-ScR guidelines, we searched MEDLINE, Cochrane Library, Embase, and Web of Science for LHS research studies using HCD to engage patients and the public. Data were categorized by: (1) Study Characteristics, (2) Participant Characteristics and Group Dynamics, (3) HCD Approach, Stages, and Methods, (4) Participant Satisfaction and Engagement, and (5) Focused Demographic Participation.

Among the included studies, participants in the HCD process included children and adults with conditions such as cancer, dementia, and stroke, often joined by their families and healthcare clinicians. Research spanned innovations in patient engagement, digital health, quality improvement, care delivery, environmental design, and clinical support tools. Participatory workshops were the most used HCD method. Group activities fostered creativity and diverse perspectives; individual activities offered deeper insights. A common challenge was limited engagement in later design stages, particularly prototyping. Studies involving harder-to-reach populations implemented extreme user design, creative design tools like photovoice and the 1-2-4-All technique, and community-based participatory research principles, all integrated into the HCD process.

Our review found HCD to be an effective method for engaging patients and the public in LHS research. It has been applied to engage individuals across a wide range of health conditions, age groups, and socioeconomic backgrounds, driving targeted innovations and system-level improvement. Its adaptability allows real-time adjustments in research pace and design, enabling iteration, strategy refinement, and inclusion of new populations as insights emerge. Blending discussion-based methods (e.g., interviews, workshops) with experiential approaches (e.g., role-playing, prototyping) boosts participant engagement and satisfaction. Future research should identify optimal group sizes, the most appropriate methods for each design stage, and the impact of integrating HCD with other research approaches.